On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Friday, November 21, 2014

More Healing

We are still here. Phoebe is healing and although we have a long road ahead, we have taken many steps forward. We are in a place that seemed impossible just a month ago when Phoebe was in ICU.

We are grateful. 

There are still many uncertainties and we don't have a set plan, but we are doing what we can to get Phoebe well and focusing on the little things. There is a lot of good in these little things and we believe and we hope that they will continue to add up and lead us to a smooth path. 

The little things ... 

We are out of the hospital, and we are all sleeping under the same roof. 

Phoebe's liver is improving and her once brilliant yellow and jaundiced complexion has faded to look like a beautiful tan.

Phoebe is smiling, laughing and she wants to play and do crafts with Mae. This after months of telling her sister to go away, just soothes our weary souls.

We have counts. After a few days with an ANC of zero, Phoebe has now recovered her neutrophils again and today, they are almost in normal range. She is still needing regular platelet and red cell transfusions but these cells are the last to recover and the thought among Phoebe's doctors is that even if they are recovering, they may be busy with infection and the inflammation that comes with that.

Today, Phoebe got out of a chair by herself and attempted to walk. She ended up falling down, but that she tried is a huge accomplishment. She will walk a few steps while holding on to one of us, and she can stand independently. This after being in bed or on the couch for months, after two strokes, and with little legs that are so thin and weak it doesn't seem possible that they could hold her up, is amazing.

We said good bye and good riddance to the feeding tube on Wednesday and Phoebe has been holding her own since then. Eating and enjoying wholesome real food is a part of what makes Phoebe, Phoebe. I often think that she is destined to be a chef because she loves eating and trying new food and she truly savours it. To watch Phoebe eat is a beautiful thing.

Mae is happy. Mae, who turns 6 on Tuesday, has been busy wrapping gifts for Phoebe to open on her birthday. She finds things around the house, wraps them in homemade paper, and hides them. "So Phoebe isn't left out and so she smiles". Mae is our secret weapon. She is Phoebe's healer. She has encouraged her to eat more, to use her left arm that was once completely limp after the stroke, to laugh often, and when Phoebe stands up or tries to walk, it is Mae that cheers the loudest.

Tonight while Mae and Phoebe played Lego together at the hospital, Phoebe leaned towards her big sister and said, "I love you Mae". The smile on Mae's face lit up the room.

We know that we are doing everything we can to get Phoebe well, and we are grateful to Phoebe's doctors for supporting us, listening to us, and for always keeping Phoebe at heart. Phoebe has come very far and overcome many things and that her doctors continue to work to find something that will give us more time, or the cure that we desperately hope for, is a beautiful thing. No one is giving up on our girl.

Today we had a meeting with Phoebe's oncologist, her transplant doctor, her nurse and our quality of life doctor. We have been followed by the quality of life team for some time now and although their title suggests things that we hope we will never have to face, they have been a blessing and a comfort to us. They listen. 

The meeting was overwhelming but also hopeful. We wanted an idea of next steps and we left with short term plans to repeat the bone marrow aspirate in 2 weeks, to continue healing Phoebe's liver and infections, and to possibly start a very low dose of chemo after the aspirate to maintain this remission that has remained miraculously stable in the absence of therapy. We have long term goals of trying to get Phoebe to a place where an innovative third transplant at St. Jude is a possibility, with the hope that this will eventually cure her. This is months and much healing ahead of us and not an option right now because of all that Phoebe still needs to overcome, but she is getting there. We are grateful to still have options, but we are also very aware that what Phoebe needs most right now is time to heal and to be as carefree as possible.

We have hopes and plans to go home for Christmas - this is something that was brought up by Phoebe's doctors today and a goal that we all share. Both chemotherapies that Phoebe received here, drugs that have done wonders for her disease and are part of a protocol that has seen a lot of success here at St.Jude, are not approved by Health Canada for use in children and therefore may not be available to us at home. We plan to give Phoebe one of these medicines to control her disease and while we will do what we can to shout it from the rooftops that we should be able to receive it in Canada, that Phoebe's health is not dependent on another fight with the Canadian government and we can receive it at St. Jude is a blessing that I don't have words to properly express. Thank God for St. Jude. This does mean that a stay at home will most likely be short, or that we will need to return to St. Jude frequently, but many of these plans are still very tentative and depend on Phoebe.

It is the little things and among these little things is Phoebe. Phoebe is a beautiful force. She is mighty and strong and she amazes us everyday. She has a way about her that is impossible to describe. She is wise and most of the time I am certain that she knows things that we don't. She is our fearless leader and we are so incredibly grateful that she is coming back to us.

We are thankful for each and every day.

Go Phoebe go.